raneyf
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Posts posted by raneyf
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Thank you for your post. I'm having kind of a hard time right now, and that really makes me feel better.
Raney
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Hi Rachel,
Happy to hear you're feeling good and are rashing out. I'll be looking for a good report sometime soon to hear that the Tarceva is working. Keep fighting.
Raney
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Finally had a thin-cut MRI on Monday in preparation for my SRS scheduled tomorrow. Saw doctor today and of course there are 11 tiny brain mets that showed up. So, now the plan is 3 weeks of WBR, then two week break, then start trial of docetaxel and obatoclax mesylate. I'm ready for the fun part of the roller-coaster any time now.
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Sorry Aaron. What a bad day - and something not expected also.
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My son's preschool teacher asked me if "they were giving me good percentages and stuff." I'm like, for survival, no not really. People aren't mean-spirited for the most part, just horribly uninformed on how serious this is. I think because I look and act pretty normal, it's misleading too, but that's o.k., because I'm trying to fake the cancer out too.
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Hi Cheryl,
I hope the trial has great results for you. I wanted to post and let you know that you're the reason I requested an MRI 10 months after my initial "clean" one at diagnosis. It showed an asymptomatic 6mm met. I wanted to thank you for that, and let you know that you've helped me in that way.
Raney
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Hi Aaron,
I'm sorry to hear about the liver thing. I'd try the Cisplatin too and just count on it to work. Have you seen the blog toosexyformyhair.com? Lori, the writer, is young and has Metastatic Cancer of an unknown primary for several years. Recently she's been on Avastin only and doing the Budwig diet. After 6 months, she got CT confirmed regression of lung and liver tumors. I just have to believe that somehow we're going to be o.k. You're going to have a beautiful wedding with Julia and a wonderful life together, and I'm going to see my boys graduate from highschool. I'll be looking for good results from the Cisplatin. As Ernie would say, Stay Positive.
Raney
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My thinking was that if they weren't calling me hours after my scan to tell me bad stuff (like they were after my PET when they were worried about my femur fracturing), then it probably isn't immediately dire. So, maybe still a met or mets, but not likely to be horrific news, hopefully. That's my philosophy anyways. Sorry about the pirate look for the trial, but I hope it's less annoying if you cover up the eye.
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I think you need to at least call and talk to the rad onc about the vacation. I don't know how many treatments he'd be getting, when they'd be starting, etc. The doctor should be able to help you. I think, if you're in the middle of radiation, the doctor will not want him to miss treatments, but that might vary by situation.
Good luck, I hope you get to go on your trip.
Raney
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Well, I felt really bad when I learned I had the brain met, but after talking to the radiation oncs, I feel much better. They told me they would consider doing SRS for up to 5 mets at a time given my age and performance status. They also did not recommend WBR at this time, since I only had the one small one that took quite a while, relatively, to develop. They said, in the event that I do have to have WBR, they would go very slow to try to minimize any cognitive difficulties. The last thing was, that although median survival after brain mets in NSCLC is on the low side, they expected me to do quite a lot better than that because I was an "exceptional" LC patient. They think they can control my brain at this point at least. Oh, they also said SRS was at least comparable to resection, if not better, according to both rad.onc. and neurosurgeon.
Also, if progression is only in brain, your chemo is still working, so that's good news. Hopefully it's just your medicine. When do you get scans?
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I think that is really nice and a good tribute to your mom. It would have made me happy if I had been at the infusion center, so I'd say it was a great day. I think you gave at least 15 people a smile and made a difference in their lives.
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Really, I'd say bet whatever you want, but at least you have a realistic chance. I'll trade with you today if you can figure out how to make it happen.
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The only place I'm aware of where chemo doesn't generally help is the brain. There are some exceptions to that, with Temodar (sp?) and I think some say Tarceva crosses the blood brain barrier.
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I don't know, but wish someone could interpret. If that's the case, I wonder what my kids risks are, since I was diagnosed young and a never-smoker. Maybe I should ask the pediatrician for spiral ct's.
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I'm so sorry for your loss Teri. I could always tell by both of your posts how much you two loved each other.
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Hi Robin,
I think they do a lowered dose to give it to you on the weekly schedule. I think the doctor means they will give it to you until your blood counts are too low, other bad effects are too bad, or the disease progresses. I'm sorry you're having to go through this. I'm right there with you though. Just take it a day at a time and keep praying for a miracle - that's my philosophy anyway
.Raney
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Hi Lilly,
I'm sorry about the trial. Tarceva should have worked for me and didn't (had everything except not Asian - don't know about EGFR), so maybe you'll be the opposite. I don't think they know why it works sometimes and not others. I'll be praying for you to have an excellent scan in 7 weeks.
Raney
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How are you implementing this diet. I read Lori's blog too and have the Budwig diet books, but the diet looks really hard, even to find some of the stuff. What's your experience been?
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I've been having tests all week at my request to see where we were after the abraxane/carbo/avastin combo.
Bad News from PET: Two new bone mets, right femur, left ischium. Some new lymph involvement in abdomen and above left collar bone.
Good News from PET: Lungs look stable to better still. Previously radiated bone mets look good.
Bad News from MRI: 6mm Brain Met
So, I'm being radiated for the bone mets. Looks like I have SRS ahead of me for the brain met. Then maybe a clinical trial of docetaxel and a new drug - something like Obiterax (sp?). I'm not sure about the name of that other drug. He was going to write it down for me, but we both forgot. I have to finish all my radiation first anyway.
So it looks like I have a bright future that will include lots of chemo.
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My point in telling people I never smoked is to show them that ANYONE can get this disease. I'm trying to prove the point. I'm not judging or trying to set myself apart from smokers for any other reason.
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Has anyone had progression in bones only? What happened as far as treatment? New Chemo? Had a PET today and apparently there's a new lesion in my femur
. They "think" everything else looked good, but the report wasn't posted in the computer yet, so I'm not positive about that. I know I'm getting the femur radiated - just wondering if I'm not going to be on the Avastin only plan anymore. -
I was already in treatment when I met with Dr. Carbone. I don't know about the option of having him be in charge but being treated in AZ. We asked about how it would work and he mentioned traveling back and forth to Nashville or moving there. The other option wasn't mentioned, but we didn't specifically ask either.
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I met with Dr. Carbone at Vanderbilt for my second opinion. He is very smart and told me they pretty much do anything they think might help someone. He agreed with my treatment plan and told me to feel free to contact him when I'm at a point where I'm needing some more options. He was, however, very blunt and told me to get used to the idea of not seeing my children's high school graduation. I did not like that, but I guess the point was to remind me they couldn't cure me??? I prefer my doctor's one day at a time, open-ended approach, but other than that I thought it was a good meeting.
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Hi Lilly,
Did the manis and pedis - just went to higher end salons, not the cheap nails only places in strip malls. Also had them sanitize extra good. Buying your own tools is a good idea too.
I didn't draw my eyebrows on, I'm not that good at it. They're back right now and they did start as little hairs, but didn't seem to take too long to make a pretty good showing.
Don't know anything about the eyelashes.
I had to use lots of Astroglide - worked better than anything else I tried. I was afraid of the estrogen cream too. I would use a lot of the stuff - and if it wasn't enough, stop and use more. Now that I'm only on the Avastin, I don't seem to need so much - not sure why, I'm pretty sure I'm still in menopause.
HTH,
Raney
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. They "think" everything else looked good, but the report wasn't posted in the computer yet, so I'm not positive about that. I know I'm getting the femur radiated - just wondering if I'm not going to be on the Avastin only plan anymore.
New to this community!!
in INTRODUCE YOURSELF!
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Hi KHTM,
I'm happy to hear you've responded to treatment so well. I'm not real good at the watch and see approach either. Maybe now would be a good time for a second opinion? I'm 31 with 2 young children also. There are several young people on here with advanced LC. Keep being strong and positive. Take care.
Raney